To the father who writes on his blog “my son is affected by autism.”
To the professional who tweets “ . . . families affected by autism.”
To the mother who declares at a social gathering her child is “not defined by Aspergers.”
By now, you are likely well aware of person-first terminology, such as “person with autism” or “person with Aspergers, “ and identity-first terminology, such as “autistic person.” The terms are used interchangeably in the autism community, dependent upon personal preference. Sometimes the terminology is altered when addressing a wider audience, as you will note in this post.
What you might not be aware of is that autistics have been discriminated against historically, first institutionalized for being perceived as feeble-minded and out-of-the-norm, and later stereotyped by the mainstream media as individuals that are incapable of empathy, imagination, relationships, compassion, and the like. We have been told what we are and who we are by self-declared professional after professional for decades—those who claim to know what it is to live on the autism spectrum, without ever being autistic themselves.
To date, autism conferences will host thousands. And who will be the presenters? Non-autistics. Of course, there is the growing trend of the token autistic spokesperson on stage; nonetheless, still surrounded by the “professionals.” But this is changing. It’s no longer acceptable. It’s no longer about who will draw in the most crowd and the most money. It’s finally about the autistic voice.
And we are at last, as a collective, finding our voice.
In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated. Contrary to mainstream belief, perpetuated by mass media profiteering of the tagline of ‘autism,’ Autism Spectrum Disorders (ASD) are not a mental illness. Though ASD falls into the barracks of the DSM-V, ASD is a neurological condition.
I chose the word “condition” with caution, because as an autistic woman, I do not choose to see myself as having a disorder. Nor do I choose to see the thousands I know, who identify with being Aspergerian or autistic, as having a disorder. We are not made wrong, or wired wrong, or something to be fixed, or worse—eradicated. Though the word“disorder” definitely has its place and purpose, particularly in obtaining much-needed services, for instance, in partaking in mental health therapy sessions to process what it’s like to be autistic in this society.
We are different. Innately born to see the world through an alternate lens. And through my anecdotal (non-science based) evidence, a result of corresponding with upwards of 10,000 individuals touched by autism, I am able to conclude that a vast majority of autistics are greatly empathetic, kind individuals who do not understand manipulation and bullying, and seek to be the best person they can be. In my experience, few, if any, autistics set out to intentionally fool or hurt anyone. In that light, our lens, though markedly different from the mainstream, is effectively brilliant in its capacity to view and move through life.
The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.
It’s not easy. No doubt. To raise a child on the spectrum. But life isn’t easy. There are parents I know with children with cerebral palsy, with severe learning difficulties, with life-threatening conditions, with low life expectancy, but they don’t say (ever) how their child’s condition has affected the family. Why would they? Why would they lay that guilt and responsibility upon a child who has no choice but to be what they are?
Perhaps you think that their circumstances are different, that these aforementioned parents of special needs children have accepted the situation, that they have realized and come to terms that there is no “cure.” Well, there is also no “cure” for autism. In most cases autism is a genetic condition, and in all cases a neurological condition. Anyone claiming to have cured themselves or their child perceivably didn’t have autism to begin with. I can trace autism up my family tree. What makes me think all of a sudden I shall be different from my ancestors? And why would I want to be?
Some children are misdiagnosed with ASD. Some adults are too. In my opinion, those are the ones that are miraculously “cured.” And if that is not the case, then, like my son, the child (or adult) matured and grew into himself, establishing techniques to function better in the world. But inside, beneath the skin, is the same person, the same brain, the same autism. How does it feel when a prominent celebrity (or common person) proclaims with pride their child no longer has autism and is cured? It feels like I am invisible again. That I am not recognized for my way of being. That my way of existing is once again wrong.
Autism isn’t something that can be erased. Yes, measures can be taken with supplements, diet, etc. to improve functioning and cognitive processing. Huge improvements can be made in the ability to feel accepted and loved and to gain a sense of belonging. And also, strides can be made in functioning better in the mainstream. Yet, overall, it is not that we, as autistics, as people with autism, are affecting the family or society; moreover, it is that the person on the spectrum is affected by societal norms. It isn’t that we are the puzzle or that autism is this separate entity beyond me that is the puzzle; it is that the world is a puzzle. Just look around you.
Circling back to remedies and cures: my good friend did everything she could do for her son on the autism spectrum, all the diets, supplements, chelation, and so forth. All the latest remedies. He progressed brilliantly. On the other hand, I took another route. I accepted, I watched, I immersed my son in creative endeavors. I homeschooled, and I taught him about communication, society, and psychology. I taught him about cruelty, injustice, and trickery. Both our sons are around the same age, and both are functioning at independent levels. My son, who is now 17, is to attend junior college and finish his high school education there.
I didn’t incorporate any biological remedies, medical interventions, or supplements or strategies. Basically, I let my son be himself and taught him as best I could about this world. When he was a small lad, he never took a nap. He didn’t fall asleep (in the hallway) until midnight. He couldn’t stay in mainstream school. He was violent. I couldn’t leave him alone for a minute. He had Tourette’s and would say “fuck, fuck, fuck” at children’s parties. He had stimming that was not socially appropriate. But I never felt the need to publicly bleed out my woes to the masses about the personal life of my son. Mostly, I cried, I carried on, and had faith that he was gifted to me for a reason. (Yes, I sought out support, but behind closed doors or through somewhat private, sheltered networks.)
Ultimately, my son with autism taught me self-love through the act of accepting others unconditionally. And really, there is no greater gift than that. For me, it was worth the exhausting struggle.
I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me. I leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.
I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes. I have chosen to believe life has a purpose, situations lead to growth, happenstance makes me stronger, wiser, and more compassionate. I choose not to make “autism” my enemy. I choose not to place blame on something outside of myself. Instead, I see autism as my son’s badge of courage and my badge of faith.
For those that are considering they might be on the autism spectrum, I have written and/or gathered some resources that might be of interest:
Professionals Often Miss the Mark in recognizing autism in adults
There are specific traits that might be prevalent in the autistic adult
Getting an official diagnosis or recognizing ASD in one’s self can have beneficial results
An extensive resource list of various autistic professionals, advocates, artists
More traits of those of us on the autism spectrum
About the author of this article: Samantha Craft is the author of Everyday Aspergers. Ten Years in the making, Craft’s book is receiving positive reviews and support from professionals in the field of autism and autistic individuals. Craft is in touch with thousands of autistic individuals throughout the world. Her book is available on Amazon in soft back and as worldwide e-book in many countries.